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Ping2 on the RUN =D

I set my goals high! Yes, I fell hard all the time but time and again have shown me that I landed stronger, to climb again! When you know you are going blind, you wake up everyday not to meet others' expectation, but to work hard for what you truly enjoy and believe in. This is my journey

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Retinitis Pigmentosa

Saying goes, seeing is believing, does this means losing sight is disbelieving?

Join me on a roller coaster ride to disbelieving… hmm…this sounds like my PhD.  I am now transitioning from an independent life, doing my PhD full time as a foreigner in Melbourne to back in the hometown where I came from, where public transport is non-existence and being the “smart ass”  I choose to be avoid the unwanted from happening, I stop driving!  I now reply on my closes family to drive me!  Hell!  I am a really lucky girl!   Haha, this is my “new” life!

Doc said you are lucky if you still have your vision at 40, this year I hit 37! Time is running out! I am trying my best to live the moment! Everything I do is
purely based on the basis, I enjoy doing it!

I used to rent a room with a housemate in Melbourne, woke up, made my own breakfast and take the tram to uni, the sometimes I run home.  Now, I hardly move!!!!  I wake up to  do yoga, my dearest mummy makes me breakfast!  I go to work on my PhD.  PhD??!!! Haha, my committee thinks I am below the standard, but I just continue doing what I enjoy and I have a feeling I piss off a lot of people.  Hey!  Is part of my disbelieving process. After a day in uni, I go home and enjoy my walk or run on the treadmill and play with my three cats!  I still have some believe system, keeping myself active!  I believe that standing healthy, maybe I wont lose my sight that fast!

Is My Karma

I had been repeating this same story over and over again and I want to let this go but I know is a valuable learning lesson for myself.  My bro told me to write a book and all profits go to support RP patients, I seriously do not think anyone will be interested.

This is not to blame anyone, there is no one to blame, I did not choose my genes.  I guess this is something most RP patients will ask, can my partner accept me when I am blind, can his/her family be able to accept my condition and how if I choose not to have kid? This is my experience, everyone goes through different experience.

Yes, I decided to leave Melbourne and go back to my hometown to be with family and fiance.  Is a small city with terrible or almost nonexistence public transport.   I decided to stop driving, I do not want an accident to happen to other people just because it was more convenient for me to drive.  The first week I am back, everyday my parents will drive me to my then fiance’s home, which he lives with his family.  We work in the same place.  That week, every day his mum attended Qi Gong classes.

After a week, on a Thursday specifically, his mum did not attend the class instead, she stayed home.  She told me she has something to tell me.  She said I came too early and it disturbed his son’s sleep.  I told her honestly, I told my fiance, I will follow my brother in law to work as he lives nearby and needs to send his son to school but my fiance insisted I followed his car.  Then his mum said, you need to be independent, once in a while you need to drive.  This was a slap in the face.  She did not know my condition.

Before I decided to get engaged, from the start of the relationship, I told my ex, please inform your family about my eye condition and he replied he did.  His parents said it is up to him to make the decision.  He said he choose to be with me, that is why I agreed to go with the engagement.  I have nothing to hide.  I told her nicely about my condition, where I am slowly losing my eye sight.  And she said sorry for bringing this up and she made a point to add that I must realised that things are getting more expensive now.  I replied her honestly, I am glad she brought this up.  I have nothing to hide.  She told me to meditate so oxygen will flow to the eyes.  I agreed.  Then she said maybe you guys should consider getting married and age is catching up and you might have problem having kids.   This was the biggest slap, she didn’t know this is a genetic problem.  I told her nicely, you are a mother, you should be able to understand how I feel, I cannot put myself to have kid knowing I am going blind and to have a kid like my condition, I really have no heart to do so.  I said I am Buddhist and I know, as long as I am on this earth, we have to go through this suffering.  Her replied, this is my karma.  I am glad all these happened right in front of the Buddha statue because it gave me this calmness, superficial you might called me.  I gathered myself and by then my ex came out from his room.  I am glad his brother followed in the car.  It gave me time to think through things.  Before this, we agreed no kid but when my then fiance saw the article on surrogate mother, ovum donated from others, he did brought the topic up.  But from the start I really do not want to burden another human being.

That afternoon, I confronted him, why didn’t you tell your family?  Why did you lie about telling your family when you didn’t?  He replied, he really love me for my honestly from the start and my willingness to communicate about everything.  The trust is broken, I think his mum “rescued” the situation from turning bad.  From the start until now, I do not blame him, I do not have the heart to blame him at all.  He is a normal person that only want a normal family.  Now is clear, I know his family really want him to have a normal family and most of all, he wants kids.  My personal advice, in a relationship, if both are heading the same direction, is alright but when both are moving the opposite ways, re-evaluate the relationship.  Is hard now but is better now then later, is for the best.  I did not see this coming but is not surprising.  I think I am upfront about my condition, preparing for the worse, despite all these, things might not necessary turn the way you expect, because age changes what we want.  I too understand, time heals.  I only wish him and his family the best.

A good friend asked me, what is your plan now?  Pick up the loose end.  Finish my PhD, be comfortable in my own skin, to travel again, maybe design things for the people like me or teach programming to kids 🙂  Keep the hope alive!  This is my karma! 😀

my biggest fear is not myself

I live my life never letting RP stop me, just to fall for this one!  From the start I made it clear, I am going blind and this is a genetic disorder and we are not going to have kid, again and again I reminded you.  I never see this coming, calling off my engagement.  I fear my kid will be like me, my parents didn’t know, but I know the consequences clearly.  This is a normal question RP will ask themselves, do you want kid that might have the same problem at you?  There are those that are brave, knowing everything and still take the risk, I do not fall into this category.  Self sympathy is strong, but I need to let this go, I come so far for my PhD, I have to finish this.

Goodbye my love, wishing you and your family all the best..if you think this is hard, is even harder for me…

I don’t hide my Excitement – My 1st ever full marathon Done!

Since the my last 21km last August, I never run more than that because I was concentrating on another thing on my bucket list, my PhD.  Officially, I am done with 2 things in my bucket list, ran a full marathon 5H34mins and ran for awareness of medical research in for RP!  #RPAwareness

If you would like to support my initiative: https://give.everydayhero.com/au/retinitis-pigmentosa-medical-research

Special thanks to Alex for the wonderful dinner, Trista, the amazing desserts and Lisa, for always being there for my runs!  Love you girls heaps!  Not forgetting the lady that gave me Allen Snake jellies!

The run experience, I started with the 4H20min pacers, slowly drifting off but is ok, is my own journey!  I was upbeat till the end, the energy level was good.  I was always running with the 35 years spartan runners!  Another lady, her 200 marathons!  Inspiration!  Then there is those running for cancer.  Most inspirational, almost heading back to MCG, there is this boy, cerebral palsy with his dad.  Everyone was cheering for him, I past him and heard his dad asked him, “Do you want to do this?”  He replied, “yes”.  I turned back and saw his dad said we will do this together, his dad kisses him.  Catching this moment melts my heart.  Things happened for a reason, catching that moment showed me that the hardship I am facing is nothing compared to them.  All the runners I came across, keep me grounded!  This full marathon experience has been a superbly humbling one.

About the run organisation, there is no more energy drink after 21km, and no apple or banana end of the race.  I walked the last 4km, because of knee problem.  Honestly, it didn’t take me that long.  Then my friend said even for 1/2 marathon, no apple or banana end of the race.  I joined the year before and it was not like this!  I am not even comparing to those overseas ones that I had ran before like KL or HK marathon.  Even compare to Brisbane marathon, Melbourne Marathon really need to step up the game! #MelbourneMarathon2016

From a low point to a high point, the day before the race, I was told my dad was hospitalised and my dog died.  I really want to finish my PhD fast and move on to the next stage of my life!  Mentally, the starting part of this run, I was really anxious that I will not be able to finish.  As the run started, I am imagining that Tung2, my dog is free now, the happy old Tung!  Before this he had a stroke and can’t move.  He was a good dog.  Then the later part of the run, I feel I am so lucky, RP has no physical pain at all, compared to other diseases.  I stayed upbeat all through the run because of this positive energy others generated!

“We are too busy to make a living till we have forgotten our dreams or is it that, we are so busy chasing our dreams that we have forgotten how to live?  I thank early detection of RP, you make me realised life is more than chasing dreams.  A simple word: living but extremely hard to balance!”

By the blind, for All

My research is to find a way to detect meaning changes in revision in a multi author environment. Most authors think is for them but what has always been part of my design is to make it easier for the vision impaired to participate in collaborative writing. Vision impaired limits mobility and we are human, we are social being. I strongly agree with him, Design with the blind in mind, is a universal design. The awakening moment, before I was diagnosed with RP, it never Cross my mind designing with the blind in mind.
I thought I will not have the mental strength when losing so much of my sight, instead this “last” stage, I am the most courages. Have you ever tried making a hot drink with your eyes shut? 10 years ago I thought learning Braille will be the hardest, today I think learning to live when I am blind will be hardest. I am slowly learning, is alright to be vunerable but is not alright to give up.

Rare Diseases Medical Research

While walking home yesterday, the idea crossed my mind again. Since I am running, why not raise fund for RP medical research? Although I stated here RP because is part of me, in reality, all rare diseases need your support especially in medical research. Is so rare, hardly is money going in and no money means that the diseases will “claim more lives”. I know is not easy in medical research, any research to be exact. My hope is a way for early detection, which gives a way of preparing patients how to handle the disease at a later stage and the detection method is “cheap” to reach to 3rd world countries. Most cases of RP with no family history, only get detected when they are almost blind.  Even if they have the money, sample in medical research can be “rare”. My previous post where I donated my tissue sample and blood to Centre of Eye Research Australia and Australia Inherited Retinal Disease Register and DNA Bank.

To support my initiative:  https://give.everydayhero.com/au/retinitis-pigmentosa-medical-research

I would be delighted if you donate for RP medical research but if you don’t, consider donating to any medical research for other rare diseases, something you can place in your heart and be happy about. Most importantly, no matter how small your contribution, there are things that purely depends on you, it always begins with you.

We don’t want your sympathy, just your understanding

Updated, thanks my dearest RP friends! This is for us by us 😍

RP patients are mostly not blind yet. We look “normal”, no white cane, although some of us do have our faithful white cane especially at night. Our vision is just less.

  • When we tell you we have RP, we don’t want your sympathy, just your understanding.
  • We have dark blindness. When we said we can’t go if it is at night, no, is not because we don’t like you. We like you so much that we know your house and my house are really far, so I don’t want you to go through the hassle to bring me home late at night.
  • Please, do not leave the cabinet door open or anything on the floor. Our vision is tunnel vision. We are really sorry to the doggies or cats we accidentally step on. We love animals! I knocked on this sign in public lots of time. Yes, we developed ability to laugh at ourselves, but please don’t judge us as clumsy.
  • When we said we will not see screens, we are not being lazy to check email or work. Our eyes just can’t take it.
  • Yes, we run, we cook and do everything like normal people do but we might not realised we dropped something and mess the place. When we dropped something, very likely we can’t see it. We will be super grateful if you can help us find although is just “right” in front of us.
  • If possible, can the steps have different contrast? Dark grey steps makes it super hard for us because we lose our colours slowly. Black, dark blue, dark red, anything dark, the dark side is a black hole! We can never find anything! But sometimes even if the thing is same colour as the background, we too can’t distinguish.
  • When we say we can’t see, we really can’t see although sometimes we can.  If you see me in public and wave but I don’t wave back, it’s not because I don’t like you; it’s because I probably can’t see you. We too are not being rude when we accidentally bump into stranger, we bump into pillars too.

Thank you very much for your understanding! Dearest RP friends, anymore to add? With this, I launch my #RPAwareness. RP friends, family and friends, feel free to share this.

Yes! You can program even if you are blind!

I found these sites and you guess it right, I am doing a computer science course!

Is really not easy coming from a poorer country and to be blind.  You have my respect:

https://en.wikipedia.org/wiki/T._V._Raman

More discussions here:

When things are tough, I will think why not just give up since the future is bleak?  I had been to a university in Malaysia and now in Melbourne, you can really count the “number” of people with special needs!  I really hope is not because of the lack of opportunity but just need some special training.  I am almost done with the first part of my computational model!  System AND Goal!  Visualise the happiness at the end of a hard journey!  Go Ping2!!!

System: Learn to perserve

Goal: Link the T / H to the earlier alignment results

Inspiration from the outside world

I am currently reading Daniel Kahneman’s Thinking: Fast and Slow. How your brain learns: what you see or experience is what your brain learns. I realised I have a “tunnel vision” where I learn only from my own experience, what about learning from others? This is my definition of inspiration from outside world. I will keep updating this page if I find any new blogs which can inspire me.

My running inspiration comes from Todd http://toddkeating.wix.com/toddkeatingrp

I have a tendency to push myself because I fear when I can’t see, I will have regrets. Is entirely wrong mindset. I found another blog which keeps me more grounded, I am only human: https://floweringink.wordpress.com

When it comes to my work, I hope I can create more software with Blind in Mind!  https://www.ted.com/talks/chris_downey_design_with_the_blind_in_mind?language=en

These are what I hope to be after I am blind! 😀

  • She happily explore new places with her guide dog, is a happy thought http://discoveryeye.org/coping-with-retinitis-pigmentosa/
  • I am not sure about being a mother because my case is a genetic problem, but we will never know the future   http://www.blindintuition.com/
  • Another Blog I can’t find. She is not RP but lost her vision to another problem. Her then husband divorced her but she picked up again, learning simple things like pour hot water etc. went back to school and eventually re marry a blind musician. Her story  let me feel there is a hope of happily ever after…

Today’s mood: happy

Goal: extract out O and R

System: ability to discuss my work I love what I do

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